After getting opinions from every doctor, nurse, and specialist involved with Cecilia's care, and debating the pros and cons of our options, I have come to the decision today. Cecilia needs a lot of help with feeding. She has only gained a few ounces from her birth weight. Fattening her up is extremely important for her next surgery. HLHS death during inter-stage (the time between her stage 1 and stage 2 surgery) is a frightening reality. She could get a g-tube/ Nissen surgery and come home. She could stay in the ICU where she is now until her Glen , because she cant come home with an NJ feeding tube(requires x-rays every time its placed), and she does not drink enough orally for it to be safe for her to come home on an NG feeding tube. Or she could be transferred to a pediatric rehab hospital for intense speech therapy. The pros and cons about the G-tube: Pro's- she is guaranteed to gain weight; her feeding tube is outside of her stomach, so it is out of the way; She can come home with this type of feeding tube, and work on her oral skill with less stress as an outpatient. Cons: It is a surgery and the Nissen will make it so that she can not throw up again. Cecilia has at least 2 more open heart surgeries ahead of her, and probably a heart transplant at some point. I can have all of the hope and faith in the world, but it is very possible my baby will not outlive me. So of course, I want her home ♥, but I think I would like to keep a g-tube/Nissen option as a last resort, no matter how tempting it is to make it my first choice. The Pro's and Con's about staying at the ICU she is in now: Pro's- she is going on 6 weeks of living here, I know every doctor, NP, RN, and specialists. I have come to a point where I feel comfortable with her there. Everyone knows that I need to know everything and they make sure I am informed; She gets a visit with Cardio's everyday(the other 2 options would be once a week check-ups); Some of her nurses I have a bond with, and they care about her so much! Con's: She only gets seen by speech therapy once or twice a day if that, so she is not really making any strides with this feeding skill; It is an ICU, and out of all the options, this is the one she is most likely to get sick in for viruses and infections. Cecilia remaining healthy, and sick free is an extreme priority inter-stage! A simple cold could set off a chain event to death; She needs IV's in, even if all of her med's are through her feeding tube; This Friday Karl returns to work. He works long hours, 6 days a week, so that means I will only be able to see Cecilia on Sunday and late evenings. Even when Gina and Julia return to school this month, I can not come with AJ and Sophia, because the ICU has strict rules. Siblings can only come on rare occasions pre-approved from the Manager. The Pro's and Con's of rehab: Pro's- less strict rules, and I can bring in siblings during non RSV season(which begins October I think); They will work on her feeds primarily, it is her best chance to reach a goal before the 2nd surgery. The cons- It is possible she will stay there the entire inter-stage; People "in charge" of her care are not the same people I have come to know and am comfortable with; She will see me less because it is even farther than UMMC, Karl will be working, and once kids return to school I will be super busy. She deserves to be home and loved + spoiled by her family 24/7.
I have to give feeding rehab a chance, so in a week or 2 she will be transferred to Mt. Washington. Once she is more stable in the respiratory department, is when she will be transferred. I just got to hope they are as good as everyone keeps telling me they are, and will make my sweet baby at a point she can be with us at home and get spoiled before her next surgery (usually between 4-6 months old, leaning more towards 6 hopefully). They said we can always re-evaluate the situation at anytime.
♥ Pouty Face ♥
On a super good note, Cecilia did not have her primary speech therapist today, and she developed a bond with the one today! Cecilia drank 10 mls, which she vomited, but went on to drink 8 more after :) Even though its barely anything and so far from her goal, its still a HUGE increase from anything else she has drank previously. She was very patient with her, would give her breaks until her gagging passed, and I cried joy. Before today Cecilia was regressing on everything, even her suck skill. She is getting her vocal cords evaluated tomorrow by ENT to make sure they are not damaged (my request). Also weaning from a few meds, so this should overall be a good week for her. I am dreading Friday. I dont know how I will emotionally handle being with her even less time than am now. It is hard enough how it is currently.
Tonight is a big night for Karl, and I just want to say how proud of him I am, and how much I love him. ♥